{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,26]],"date-time":"2026-10-26T00:44:04Z","timestamp":1792975444697,"version":"4.5.0"},"reference-count":26,"publisher":"Elsevier BV","issue":"2","license":[{"start":{"date-parts":[[2025,4,1]],"date-time":"2025-04-01T00:00:00Z","timestamp":1743465600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2025,4,1]],"date-time":"2025-04-01T00:00:00Z","timestamp":1743465600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2024,12,6]],"date-time":"2024-12-06T00:00:00Z","timestamp":1733443200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000024","name":"Canadian Institutes of Health Research","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000024","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100003321","name":"Queen's University","doi-asserted-by":"publisher","award":["300817"],"award-info":[{"award-number":["300817"]}],"id":[{"id":"10.13039\/501100003321","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100003321","name":"Queen's University","doi-asserted-by":"publisher","award":["CRC-2020-00061"],"award-info":[{"award-number":["CRC-2020-00061"]}],"id":[{"id":"10.13039\/501100003321","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","jpagonline.org","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Journal of Pediatric and Adolescent Gynecology"],"published-print":{"date-parts":[[2025,4]]},"DOI":"10.1016\/j.jpag.2024.12.001","type":"journal-article","created":{"date-parts":[[2024,12,8]],"date-time":"2024-12-08T00:07:22Z","timestamp":1733616442000},"page":"167-173","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":3,"title":["\u201cDon't Give Up, Advocate for Yourself\u201d: A Pilot Study Examining Healthcare Experiences of People with Mayer Rokitansky K\u00fcster Hauser Syndrome"],"prefix":"10.1016","volume":"38","author":[{"given":"Nisha","family":"Marshall","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zwetlana","family":"Rajesh","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kate","family":"Hunker","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica","family":"Merletti","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melody","family":"Garas","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ashley","family":"Clark","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sunni Anne","family":"Ball","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M.E. Sophie","family":"Gibson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Caroline F.","family":"Pukall","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"issue":"3","key":"10.1016\/j.jpag.2024.12.001_bib0001","doi-asserted-by":"crossref","first-page":"624","DOI":"10.1016\/S0015-0282(01)01963-X","article-title":"A population-based study of the incidence of m\u00fcllerian aplasia in Finland","volume":"76","author":"Aittom\u00e4ki","year":"2001","journal-title":"Fertil Steril"},{"issue":"10","key":"10.1016\/j.jpag.2024.12.001_bib0002","doi-asserted-by":"crossref","first-page":"2384","DOI":"10.1093\/humrep\/dew220","article-title":"Prevalence and patient characteristics of Mayer\u2013Rokitansky\u2013K\u00fcster\u2013Hauser syndrome: a nationwide registry-based study","volume":"31","author":"Herlin","year":"2016","journal-title":"Hum Reprod"},{"issue":"1","key":"10.1016\/j.jpag.2024.12.001_bib0003","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1186\/1750-1172-2-13","article-title":"Programme de Recherches sur les Aplasies M\u00fcll\u00e9riennes (PRAM), Guerrier D. Mayer-Rokitansky-K\u00fcster-Hauser (MRKH) syndrome","volume":"2","author":"Morcel","year":"2007","journal-title":"Orphanet J Rare Dis"},{"issue":"3","key":"10.1016\/j.jpag.2024.12.001_bib0004","doi-asserted-by":"crossref","first-page":"284","DOI":"10.1016\/j.jpag.2018.07.007","article-title":"Spectrum of Type I and Type II Syndromes and Associated Malformations in Chinese Patients with Mayer-Rokitansky-K\u00fcster-Hauser Syndrome: A Retrospective Analysis of 274 Cases","volume":"32","author":"Deng","year":"2019","journal-title":"J Pediatr Adolesc Gynecol"},{"issue":"3","key":"10.1016\/j.jpag.2024.12.001_bib0005","doi-asserted-by":"crossref","first-page":"95","DOI":"10.1097\/MCD.0000000000000087","article-title":"Dysmorphologic assessment in 115 Mayer\u2013Rokitansky\u2013K\u00fcster\u2013Hauser patients","volume":"24","author":"Lalatta","year":"2015","journal-title":"Clin Dysmorphol"},{"issue":"3","key":"10.1016\/j.jpag.2024.12.001_bib0006","doi-asserted-by":"crossref","first-page":"792","DOI":"10.1093\/humrep\/dei381","article-title":"Clinical aspects of Mayer\u2013Rokitansky\u2013Kuester\u2013Hauser syndrome: recommendations for clinical diagnosis and staging","volume":"21","author":"Oppelt","year":"2006","journal-title":"Hum Reprod"},{"issue":"1","key":"10.1016\/j.jpag.2024.12.001_bib0007","doi-asserted-by":"crossref","first-page":"214","DOI":"10.1186\/s13023-020-01491-9","article-title":"Mayer-Rokitansky-K\u00fcster-Hauser (MRKH) syndrome: a comprehensive update","volume":"15","author":"Herlin","year":"2020","journal-title":"Orphanet J Rare Dis"},{"issue":"1","key":"10.1016\/j.jpag.2024.12.001_bib0008","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1002\/ijgo.14331","article-title":"The FIGO ovulatory disorders classification system","volume":"159","author":"Munro","year":"2022","journal-title":"Int J Gynecol Obstet"},{"key":"10.1016\/j.jpag.2024.12.001_bib0009","doi-asserted-by":"crossref","DOI":"10.1016\/j.jpag.2024.03.003","article-title":"Understanding the Diagnostic Odyssey of Women with Mayer-Rokitansky-K\u00fcster-Hauser (MRKH) Syndrome in Denmark: A Qualitative Interview Study","author":"Lou","year":"2024","journal-title":"J Pediatr Adolesc Gynecol"},{"issue":"2","key":"10.1016\/j.jpag.2024.12.001_bib0010","doi-asserted-by":"crossref","first-page":"161","DOI":"10.1016\/j.jpag.2020.11.009","article-title":"The Missing Uterus, the Missed Diagnosis, and the Missing Care. Mayer-Rokitansky-K\u00fcster-Hauser Syndrome in the Lives of Women in Malaysia","volume":"34","author":"Hatim","year":"2021","journal-title":"J Pediatr Adolesc Gynecol"},{"key":"10.1016\/j.jpag.2024.12.001_bib0011","doi-asserted-by":"crossref","DOI":"10.11604\/pamj.2022.42.314.32830","article-title":"How does the experience of the medical encounter of women with the Mayer-Rokitansky-K\u00fcster-Hauser (MRKH) syndrome impacts on them in Africa?","volume":"42","author":"Ngoumou","year":"2022","journal-title":"Pan Afr Med J"},{"issue":"3","key":"10.1016\/j.jpag.2024.12.001_bib0012","doi-asserted-by":"crossref","first-page":"300","DOI":"10.1016\/j.jpag.2018.12.005","article-title":"Sexual Experience before Treatment for Vaginal Agenesis: A Retrospective Review of 137 Women","volume":"32","author":"Dear","year":"2019","journal-title":"J Pediatr Adolesc Gynecol"},{"issue":"2","key":"10.1016\/j.jpag.2024.12.001_bib0013","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1191\/1478088706qp063oa","article-title":"Using thematic analysis in psychology","volume":"3","author":"Braun","year":"2006","journal-title":"Qual Res Psychol"},{"key":"10.1016\/j.jpag.2024.12.001_bib0014","series-title":"APA handbook of research methods in psychology, Vol 2: Research designs: Quantitative, qualitative, neuropsychological, and biological [Internet]","first-page":"57","article-title":"Thematic analysis","author":"Braun","year":"2012"},{"issue":"1","key":"10.1016\/j.jpag.2024.12.001_bib0015","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1037\/qup0000196","article-title":"Conceptual and design thinking for thematic analysis","volume":"9","author":"Braun","year":"2022","journal-title":"Qual Psychol"},{"issue":"7","key":"10.1016\/j.jpag.2024.12.001_bib0016","doi-asserted-by":"crossref","first-page":"1467","DOI":"10.1016\/j.socscimed.2004.08.010","article-title":"Health information-seeking behaviour in adolescence: the place of the internet","volume":"60","author":"Gray","year":"2005","journal-title":"Soc Sci Med"},{"issue":"1\u20132","key":"10.1016\/j.jpag.2024.12.001_bib0017","doi-asserted-by":"crossref","first-page":"63","DOI":"10.1177\/10497323221135974","article-title":"If not me, who?\u201d: Awareness- and Self-Advocacy-Related Experiences of Adults With Diverse Rare Disorders","volume":"33","author":"Plackowski","year":"2023","journal-title":"Qual Health Res"},{"issue":"1","key":"10.1016\/j.jpag.2024.12.001_bib0018","doi-asserted-by":"crossref","first-page":"135","DOI":"10.1007\/s10459-008-9100-z","article-title":"From gender bias to gender awareness in medical education","volume":"14","author":"Verdonk","year":"2009","journal-title":"Adv Health Sci Educ"},{"key":"10.1016\/j.jpag.2024.12.001_bib0019","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1155\/2018\/6358624","article-title":"Brave Men\u201d and \u201cEmotional Women\u201d: A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain","volume":"2018","author":"Samulowitz","year":"2018","journal-title":"Pain Res Manag"},{"issue":"4","key":"10.1016\/j.jpag.2024.12.001_bib0020","doi-asserted-by":"crossref","first-page":"475","DOI":"10.1016\/j.dhjo.2015.03.009","article-title":"The supportive care needs of parents caring for a child with a rare disease: A scoping review","volume":"8","author":"Pelentsov","year":"2015","journal-title":"Disabil Health J"},{"issue":"1","key":"10.1016\/j.jpag.2024.12.001_bib0021","doi-asserted-by":"crossref","first-page":"152","DOI":"10.1186\/s13023-016-0536-6","article-title":"Treatment management during the adolescent transition period of girls and young women with Mayer-Rokitansky-K\u00fcster-Hauser syndrome (MRKHS): a systematic literature review","volume":"11","author":"Wagner","year":"2016","journal-title":"Orphanet J Rare Dis"},{"issue":"4","key":"10.1016\/j.jpag.2024.12.001_bib0022","doi-asserted-by":"crossref","first-page":"505","DOI":"10.17219\/acem\/118850","article-title":"Mayer\u2013Rokitansky\u2013K\u00fcster\u2013Hauser syndrome as an interdisciplinary problem","volume":"29","author":"Liszewska-Kap\u0142on","year":"2020","journal-title":"Adv Clin Exp Med"},{"issue":"1","key":"10.1016\/j.jpag.2024.12.001_bib0023","doi-asserted-by":"crossref","first-page":"974","DOI":"10.1186\/s12913-019-4815-5","article-title":"Access to specialty healthcare in urban versus rural US populations: a systematic literature review","volume":"19","author":"Cyr","year":"2019","journal-title":"BMC Health Serv Res"},{"key":"10.1016\/j.jpag.2024.12.001_bib0024","unstructured":"Laurent S. Rural Canada: Access To Health Care [Internet]. 2002 [cited 2024 Jul 13]. Available from: https:\/\/publications.gc.ca\/collections\/Collection-R\/LoPBdP\/BP\/prb0245-e.htm#:\u223c:text=It%20has%20been%20shown%20that%20the%20health%20status%20of%20rural,severe%20impact%20on%20rural%20residents."},{"key":"10.1016\/j.jpag.2024.12.001_bib0025","unstructured":"Government of Canada SC. Difficulty accessing health care services in Canada [Internet]. 2016 [cited 2024 Jul 13]. Available from: https:\/\/www150.statcan.gc.ca\/n1\/pub\/82-624-x\/2016001\/article\/14683-eng.htm."},{"issue":"1","key":"10.1016\/j.jpag.2024.12.001_bib0026","doi-asserted-by":"crossref","first-page":"182","DOI":"10.1542\/peds.2011-0969","article-title":"Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home","volume":"128","author":"Cooley","year":"2011","journal-title":"Pediatrics"}],"container-title":["Journal of Pediatric and Adolescent Gynecology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1083318824003504?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1083318824003504?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,6,29]],"date-time":"2025-06-29T14:35:00Z","timestamp":1751207700000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1083318824003504"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,4]]},"references-count":26,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2025,4]]}},"alternative-id":["S1083318824003504"],"URL":"https:\/\/doi.org\/10.1016\/j.jpag.2024.12.001","relation":{},"ISSN":["1083-3188"],"issn-type":[{"value":"1083-3188","type":"print"}],"subject":[],"published":{"date-parts":[[2025,4]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"\u201cDon't Give Up, Advocate for Yourself\u201d: A Pilot Study Examining Healthcare Experiences of People with Mayer Rokitansky K\u00fcster Hauser Syndrome","name":"articletitle","label":"Article Title"},{"value":"Journal of Pediatric and Adolescent Gynecology","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.jpag.2024.12.001","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2024 The Authors. Published by Elsevier Inc. on behalf of North American Society for Pediatric and Adolescent Gynecology.","name":"copyright","label":"Copyright"}]}}